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Posted

Ok, so we went to the new dr today in Fort Worth, Tx...He said she doesnt have lyme and she doesnt have Pandas and its anxiety...Told me to take her off her abx and that was that...I told him he was crazy! My husband looked at me funny, but o well! He said because her tics werent continuous that it wasnt pandas. I told him I was not sending her to school in the fall if she was still having breathing and jerking spells and he had the nerve to ask me WHY @?#$##$@$#!!! Does anyones children have continuous tics? I mean, yea she is getting better but this man, who has "took seminars" told me to take my child off of something that she has been on and apparently has helped her. ...grrr! I am calling Dr K in the morning to set up a phone appt because this man has lost his mind!

Posted
Does anyones children have continuous tics?

 

I suppose you could consider Lauren Johnson's sneezing to be continuous tics. But, I've NEVER heard of "continuous tics" being a requirement of PANDAS. My dd's tics were not continuous. I'm guessing most kids aren't. And heck, you don't even have to have tics at all to have PANDAS.

 

I'm glad you told him he was crazy. :(

Posted
Ok, so we went to the new dr today in Fort Worth, Tx...He said she doesnt have lyme and she doesnt have Pandas and its anxiety...Told me to take her off her abx and that was that...I told him he was crazy! My husband looked at me funny, but o well! He said because her tics werent continuous that it wasnt pandas. I told him I was not sending her to school in the fall if she was still having breathing and jerking spells and he had the nerve to ask me WHY @?#$##$@$#!!! Does anyones children have continuous tics? I mean, yea she is getting better but this man, who has "took seminars" told me to take my child off of something that she has been on and apparently has helped her. ...grrr! I am calling Dr K in the morning to set up a phone appt because this man has lost his mind!

 

I sent you a PM!

Posted
Ok, so we went to the new dr today in Fort Worth, Tx...He said she doesnt have lyme and she doesnt have Pandas and its anxiety...Told me to take her off her abx and that was that...I told him he was crazy! My husband looked at me funny, but o well! He said because her tics werent continuous that it wasnt pandas. I told him I was not sending her to school in the fall if she was still having breathing and jerking spells and he had the nerve to ask me WHY @?#$##$@$#!!! Does anyones children have continuous tics? I mean, yea she is getting better but this man, who has "took seminars" told me to take my child off of something that she has been on and apparently has helped her. ...grrr! I am calling Dr K in the morning to set up a phone appt because this man has lost his mind!

 

I sent you a PM!

 

 

Hey it doesnt show i have a PM..Resend it plz

Posted
Does anyones children have continuous tics?

 

I suppose you could consider Lauren Johnson's sneezing to be continuous tics. But, I've NEVER heard of "continuous tics" being a requirement of PANDAS. My dd's tics were not continuous. I'm guessing most kids aren't. And heck, you don't even have to have tics at all to have PANDAS.

 

I'm glad you told him he was crazy. :(

 

 

Thanks! And, yea he told me that it might be west nile? omg!

Posted

My daughter's tics are not continuous either and she has a high CamK. It is interesting that you brought West Nile up because I have wondered about that. Does he think West Nile can cause tics and OCD?

Posted

Hi. I live in Fort Worth and have never found one doctor to help treat my daughter. We have been fighting doctors for over 2 years. We now see Dr. B and she had her first IVIG and is better. We did all our work over the past year. Blood work on her and family, antibiotics (6-8 months) and Madeleine Cunningham test. All are pieces to the puzzle and road to recovery these are all necessary.

Posted
Ok, so we went to the new dr today in Fort Worth, Tx...He said she doesnt have lyme and she doesnt have Pandas and its anxiety...Told me to take her off her abx and that was that...I told him he was crazy! My husband looked at me funny, but o well! He said because her tics werent continuous that it wasnt pandas. I told him I was not sending her to school in the fall if she was still having breathing and jerking spells and he had the nerve to ask me WHY @?#$##$@$#!!! Does anyones children have continuous tics? I mean, yea she is getting better but this man, who has "took seminars" told me to take my child off of something that she has been on and apparently has helped her. ...grrr! I am calling Dr K in the morning to set up a phone appt because this man has lost his mind!

many there is a good Doctor in plano that can help-I will Pm you my contact info so we can talk!

Brandy

Posted
My daughter's tics are not continuous either and she has a high CamK. It is interesting that you brought West Nile up because I have wondered about that. Does he think West Nile can cause tics and OCD?

 

 

He said it can cause the tics yes, but not ocd.

Posted
Hi. I live in Fort Worth and have never found one doctor to help treat my daughter. We have been fighting doctors for over 2 years. We now see Dr. B and she had her first IVIG and is better. We did all our work over the past year. Blood work on her and family, antibiotics (6-8 months) and Madeleine Cunningham test. All are pieces to the puzzle and road to recovery these are all necessary.
Where is Dr. B??

I'm seeing Dr. K soon but I live in the Fort Worth area & I'm trying to find a more accomodating doctor a LITTLE closer. ;)

Hope you're doing well!

 

Ok, so we went to the new dr today in Fort Worth, Tx...He said she doesnt have lyme and she doesnt have Pandas and its anxiety...Told me to take her off her abx and that was that...I told him he was crazy! My husband looked at me funny, but o well! He said because her tics werent continuous that it wasnt pandas. I told him I was not sending her to school in the fall if she was still having breathing and jerking spells and he had the nerve to ask me WHY @?#$##$@$#!!! Does anyones children have continuous tics? I mean, yea she is getting better but this man, who has "took seminars" told me to take my child off of something that she has been on and apparently has helped her. ...grrr! I am calling Dr K in the morning to set up a phone appt because this man has lost his mind!

 

Might be a little too much to ask, but who was this?? Sounds... Moronic.

The entire reason that my Tourette's diagnosis was thrown out the window & that we started searching for alternative problems was because my twitches had a three month remission at one point. That's what led us to believe that it was P.A.N.D.A.S. in the first place. Does the word exacerbation mean nothing to him???

 

Also, it's a bit odd that Texas has a fairly high incidence of P.A.N.D.A.S., comparatively speaking (although I really think it's just because we are so big), yet it's incredibly diffifult to find a doctor in the DFW area who isn't totally RXhappy. -_________-

Posted (edited)

 

Also, it's a bit odd that Texas has a fairly high incidence of P.A.N.D.A.S., comparatively speaking (although I really think it's just because we are so big), yet it's incredibly diffifult to find a doctor in the DFW area who isn't totally RXhappy. -_________-

 

Probably more people are aware of pand/pits and are not just accepting other diagnosis!!!

 

 

PS....just ran into my first mom..who brought up PANDAS to me...and her children do not have pandas...but she totally gets it and thinks its all pit/pand....i started to cry

Edited by Fixit

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